Wed 4 Oct, 2017 10:20 am
Years ago, a few months after my mother revealed her lymes infection, I walked into my pcp with an ear infection, bell's palsy and a slew of other symptoms including intense anxiety, panic attacks and severe memory problems that had been plaguing me for more than ten months. I tested positive for lymes. My doctor gave me a course of 30 day antibiotics and told me in the most sincere voice that all would be well and the disease would be eradicated in no time. With his words, I left the office in complete assurance. Sure enough, shortly after beginning treatment the fever, ear ache and bell's palsy cleared up. Then months later I was at the hospital for panic and to a cardiologist for palpitations and chest pain (no problems found). During the times when my mind was calm I'd find myself staring, just walking into a room, freezing in location and staring. My son was the one who noticed and would say, "mom you're doing it again, its creepy." Slowly my anxiety dispersed and life when on. During that time, i developed the most debilitating headaches in the frontal lobe(?between eyebrows) brought on by any time spent in the sun, so i avoided the sun, problem solved. Over a period, I found that i would get headaches in the back of my skull, wherever and whenever my my head came into contact with an object, especially a pillow, so I no longer slept on my back, problem solved. Around two years ago, both of my feet went numb like pins and needles only i have a bit of texture sensation. These past months they became worse almost like walking on pebbles with electric shocks and I developed so much pain in my outer calves that I had to elevate my legs so no part of the calf touched my bed at night, once again problem solved. Throughout the years my memory declined to the point I struggled with words and short term recall. A few months ago I lost it and fell into the deepest depths of a panic anxiety riddled nightmare and for the first time in my life I took an antidepressant, zoloft. Blood work revealed a vitamin D deficiency and a high anion gap. I was told to take D supplement and that the high anion gap ment nothing in my case. I was convinced my symptoms were nutritional deficiency. I had gotten fat, only ate cereal after all. And during my rapid mental decline I couldn't eat or sleep which made the hot and cold flashes, sweating and shivering, skin so sensitive I couldn't tolerate my normal garments oh so much worse. I drank ensure, took my zoloft, took my vitamins, had more blood work from a gynecologist(horrible cramps, maybe all was hormones?) and little by little after a month the anxiety went away. So i stopped taking the zoloft weeks ago and now the anxiety is back but not nearly as bad which leads me to my son, the reason I am seeking help. I believe, from my cognitive impairment that his symptoms were overlooked and now he is in such a mentally tortured state that I can not get over that my incompetence has ruined a childhood and caused him suffering.
This past week my son, Peyton's(Peyter-tot) mental symptoms had become so frightening that in my worry I went searching for someone who may have an answer. I found a site, while waiting for a psychiatrist appointment, called crowdmed.com, it is a site where you post your issues and doctors and community help solve it. On the first page a box appeared indicating I chooses between free and paid I clicked the button for the free version and i spent 1.5 hours filling out the information. Finally, when i was finished they told me to select a plan in order to activate the post on their site and they ranged from $150 a month to $700. I see the need for this because the ones who solve the problem get paid for it. I just wish the site would have told me before I built up hope. A hope that was crushed in an instant because of monetary value, I am valueless. It was the most disheartening to find that there may have been someone out there who knew what was happening to peyton but he couldn't have chance at their help for I couldn't pay. It is such a cruel ploy, that site to waits till the end, all the while letting you get so close to a possible answer and then poof they take it all away. While I filled out their forms I began to remember. During the time I was seeing a cardiologist, my little tots body became covered in stretch marks, he never really over eats but he did gain a bit of weight. I did some research and raced hi to the doctor telling my/our pcp for the past seven years what i had found and that I wanted my son tested. They tested him for lymes and after a fear filled wait we where back at the office and told he did not have lymes and the stretch marks where from him getting fat. At this visit I saw the lyme report and I saw the word positive next to the number 28(nearly positive that was the number). I asked why the chart says positive if he is negative and I was told it was irrelevant and my son was perfectly fine. Today, after years of decline and his past year fall into what can only be described as autistic type symptoms, I now know better and I am thinking he was infected along with my mother and I. It hurts. It hurts more then I could say, I hurts more then all I have ever been through to know that if I could have been better, should have known better, that I could have sparred him years of pain and mental and social decline. I am learning to ask for help. I believe my little tot can be okay again to be okay, to be happy again.
I remember so many times Peyt would have a sudden fever or a visibly swollen sore throat, only to have it vanish in a day. I thought he was gifted with a great healing ability, I now know different. I think back to the headaches, random rashes and how he used to be so free spirited and outgoing. He was ready to do anything at anytime. He had friends. He played video games and would chat loudly with anyone he played with. Then one day sudden unexplained fear and anxiety he could no longer attend school, so he cyberschooled. Then he slowly stopped wanting to go out and having the energy to do so. Then he stopped talking to his friends. Then we moved which broke him in so many pieces. After trying to put the pieces together and finding out other children with similar neurological symptoms and drastic behavior changes had discovered lymes to be their cause, I made an appointment with Peyt's new pcp to have him tested. Yesterday, I had to gently coax him(we have but one car) the mile to the doctors office, all the while he panicked and pleaded and broke my heart over and over again when I had to refuse his pleas and continue down the road. These fears come from nowhere, he has never been like this, on the way home he told me, "i couldn't see myself going there today, I can usually see myself, but I couldn't, so I got scared." While in the office after asking to have my son tested for tick borne diseases, I was told she couldn't do those tests and that I had to see one of the two lyme specialists in the area and that they didn’t take insurance and that the first visit would cost $ 350 plus. I have never been so crushed, once again, if i was working, we would have more than one income and we wouldn’t be struggling and I would have the money to care for my son. So once again his suffering come from me. I almost begged, but after a few more questions she said she could only test for the standard lymes but it is 40 percent inaccurate. So I almost begged for the westernblot. She wrote an order for testing vitamin D, ammonia levels and both lymes including western blot but I learned that with the stretch mark rash he had he should have been tested for co infections which she adamantly stated she was powerless to test for. He couldn't get the bloodwork done yet. I told him Thursday, when his dad has off. I am so scared for him.
Here is my peyter-tot's story I filled out for crowdmed
I am not very good at asking for help. I tend to search every crevice for an answer, most have been found. As of late, I’ve learned the meaning of helpless. My son has changed, everyday I see it. I cant fix it & I feel like I’m losing him. Last year we moved from the only place he called home to Waynesboro pa. A few months later, after dealing with passing sadness & waves of home sick crashing around us, my son began having these episodes that are best described as an autistic type meltdown. They are brought on by stressors such as frustration, or me asking him to do something he wasn't prepared to do,like me saying, “peyt bedtime, “ or his most frequent stressor from the past was accidently breaking his mouse from his fidgeting(causes worst meltdown). I can usually tell when his control is slipping or if it is going to be a troubled day. In the past, when these stressors happened the change was gradual & he could sometimes calm down if left alone. Now, he snaps first into a rage of bashing his desk, forcing his chair arm, squeezing a remote till it cracks, his strength is intensified & with it the rage, I must move him from the initial area to his bed, soft things wont cause pain. With this comes the headache, extreme sound and light sensitivity, repeating words to himself, stimming, unable to communicate in sentence form, unable to move his legs to walk or stand (brain appears stuck in a loop). When I tell him to move to the bed he doesn’t hear, he repeats loudly as if responding to the initial stressor. When finally he hears and he tries to comply, he can’t make his body move, his brain seems stuck. He tries harder to get up from his chair and his legs start to move & kick like running. Then he rocks in a hunched position and repeats,”wait, waaaaaaaait, just wait. “ He never gets his legs to move functionally but he gets to the bed, with prodding I get him to drink his chamomile tea & he begins to calm. His calm down always ends in tears, sadness of past life events and crying. He has no memory of these episodes. If he is slipping into one he cannot focus on any task & he retains no information. For instance, Peyt very much enjoys editing videos & was working on a project close to bedtime when I said, “hey lil guy almost bed time, “ he snapped into the beginnings of an episode. He repeated no no no no no & rocked. Then he’s unresponsive to my words, as if he cant hear them, however during these times sound & light disturbs him to extremes. His hearing turns extraordinary & he repeats” why are you shouting, why are you shouting," when it was but a whisper of words I spoke. The calm down stage from what I have been calling his ditto mode, follows a pattern. The anger and rage steps into his life, banging, stomping seething, every muscle taunt his body trembles with each new wave from any external irritant, like my words, my look, a cat nearby or the dog saying ooof. Then begins the repeating words, sometimes seeming like he is answering a question that was never asked. In his hunched rocking postion I urge him to drink his chamomile tea, which he repeats, “I don’t know how, I don’t know hooooooooow” placing the cup in his hand he tries, so very hard he tries to make this mind and body cooperate. He knows he needs to drink the tea, his arms wont move to bring the cup to him. With gentle reminders to drink and a bit of time his ditto incrementally relinquishes its’ paralyzing hold and he swallows the warm liquid in one gulp. Time passes and I know the calm will be coming when, regardless of ambient temperature, he says, “mom I'm cold, why is it so cold in here? “. With his skin cold as ice I tuck him under his blanket and use the tablet to play a video with no volume for any sound at this stage is a cause for compounded agitation and him repeating “its so loud, why is it so looooouuud? “. The distraction of the video helps calm him further and leads him to the final step through his ditto which is tears. They flood from memories and drip for fears and trickle through thoughts , “mom I miss home. What if Deppy dies?,oooh no no no no. Mom promise that I I don’t have any appointments for the rest of this month. “ His mind and body are back when he raises the volume and begins watching and responding to the video. For days after his ditto he is unable to feel normal. These dittos began last year. His anxiety has been crippling this week, any mentions of outside or future plans & he starts to slip away. He also gets headaches, cold sweats, hot chills and his vision has worsened.
When Peyton began school I took quick notice of him being 8-12in taller than every child. At 13 he is now 5.9, with a deep voice, facial & other hair (found grey hair on is scalp)also his head is almost an inch in circumference larger than the adult male standard(I hadn't noticed at the time of appointment, so it wasnt mentioned to the endocrine) This year he was tested for gigantism, I was told his hand xray revealed he was in the growth stage of a 17 year old. His recent blood work from 9/30/17 indicated a negative for lymes. His ammonia levels were normal and his vitamin d is 32. Yesterday I read about PANS and PANDAS, this seems like quite a possibility, I just don’t know, I really need help.
From around age 7 change was an issue, but he was able to cope within a day. Once I bought him a gaming chair he had been asking for, he cried over the old one, saying he can't take it, he can't take it. We got a kitten and he cried, muttering words of, "it's too different, I can't keep it," all the while he hugged and nuzzled its little furry body. I also had to advance warn/remind him of any arrangements, in countdown form, from a week away to a few days to a few hours to a few minutes. If we were going to the movies with mom-mom, I would do the usual countdown, Peyt, we’re going to the movies in 2 days, 1 day, 1hr, 30mins, 15mins... This made things easier, except for nights before, and always at bedtime, when his anxiety of what is to come upon his waking, looms over him like a blanket of dread. On such nights even if it is something that I must do & in no way involves him, the questions begin, " how long will it take, are you sure it's just the movies, when will we/you be back, what if I can't fall asleep(but for holidays, he has never had a problem sleeping), " &t it continues from 30mins to hours. He also had a mild ocd (turning, checking door knob & unable to not touch curious things, like smudges in the toilet bowl) he overcame parts of it quickly. Now 13 he touches things, especially in stores, just last month he asked "mom, can you please not leave a pan soaking? I have to touch it &I know I don't want to.”
Select any other areas affected
Eye, vision: His vision has worsened to the point of being called legally blind. This year his eyes appear to be more down turned.
Head and neck: He gets headaches every now and then. However, they always come during his episodes and are gone when he has calmed.
Skin and hair: A white hair was found in his scalp as long as his other hairs, approximately 8 inches. His finger nails are a bit soft and cracked. His toe nails are strong. He used to have a type of peeling rash on his palm that spread up his thumb to his nail. The thumb nail became infected and deformed. This was healed through trial and error of home remedies. Also, I think about 3 maybe 4 years ago his whole body became covered in stretch marks. I took him to the family doctor and had him tested for lymes. They said he was negative. I believe that was shortly after I had discovered my infection.
History, tell us about patient prior to illness: He was a normal everyday fun loving, always happy smiling and pleasant kid with a few quirks. He had a little difficulty dealing with change but it didn't control him. If I asked, "hey peyt want to run down to the store with me?" hed jump and go, but for unfun things or plans hed need a countdown to prepare. Today a countdown isn't even enough to prepare him. He was extremely intelligent and acted more like an adult then a child, which made it hard for him to get along/understand peers.
Familial diseases: I had lymes and I still have cognitive fallout. Our family history only extends to grandparents and both have no known inherited diseases. (my mother also has lymes)
Personal lifestyle prior to illness: In second grade Peyt left traditional school for cyber charter. He was having so much sudden anxiety and was vomiting at the thought of having to go.
Any ideas, hunches, experiences, I’ll take them. I need direction. I had lymes and I am still symptomatic. Today, I thought, maybe a tick born disease could be a cause of his new behaviors? He has Keystone central chip and has seen his pcp who referred him to an endocrine for possible acromegaly(told he is normal) and psychiatrist(I am afraid that only the symptoms will be treated and the underlying cause, which may be apparent to another, will continue untouched). I am weary, I feel that few pieces of me remain, those left intact are love and a tiny bit of strength, for this week has taken it all. With endless begging I plead for him to be helped
These are questions for your son's pediatrician, and not for the internet. Ask for him to be referred to a pediatric neurologist and perhaps to a therapist.
You would probably benefit from therapy as well. Also, ask to be referred to an orthopedist to be x-rayed regarding your lower extremity numbness. That can sometimes be due to the spine changing as we age and the space between your discs can get smaller, which results in sciatica which can be either numbness or pain.
Note: I am NOT a doctor. Please go to your doctor and take your son to his, and stop cherry picking advice off the internet, including my own.
Thank you for the neurologist. I will ask her about that. I am bit frustrated with his doctor, each time we go she has me tell her what to do and I just don't know, so I thank you for the insight. We are working on the psychiatrist end, for two months we have been waiting for the appointment. Waiting is hard, this week has been bad. Being idle while waiting for the doctor has made this time all the worse. I am sorry if the internet was the wrong place to go, I just needed to try something. And I thank you for your help